Friday, December 5, 2008

I was patiently reminded this week that there are in fact people who read this blog, and yet again I've let it fall by the wayside. No, my excuse is not chasing after a toddler on a vent this time. Among my alibis this go around is having been held hostage by a coven of teenage vampires for the past 7 days. Fortunately for my friends and family that chapter of my life has officially ended (quite literally..sniff,sniff) so back to blogging I go.

I wrote the following letter to Faith a few weeks ago. I was hesitant to post it, because it is not as timely as it was when I originally wrote it. I came to the conclusion that it didn't really matter, and it might just buy me some more time before I have to write another post. ;)

Thanks for the patience and persistence, my friends.

I promise, all is well in the Reming household (now if I could just dig myself out of this laundry pile).

******************************************************************The original post can be found here, but here's the copy and pasted version (warning; formatting problems abound, but I am too lazy to sort them out!)

"I will walk by Faith, even when I cannot see, because this broken road prepares your will for me." -Jeremy Camp

Dear Faith,

Like most medically complex kids, you are a frequent flyer at doctors office. I have never been consistent about keeping up with a day timer, but with all your various appointments I've had to learn to use one. Two BIG appointments this week; I like to refer to them as the crystal ball appointments. OK..not really...I used to thing that a visit to the opthamologist (eye doctor) and ENT (Ear, Noes, and Throat) were a gauge for what the coming years will bring us. Now I know better, however I do get a little bit anxious when I know these two "biggies" are coming.

Yesterday was your opthamology appointment. I was looking forward to this appointment because it was a fresh start. We have been very blessed with WONDERFUL doctors who have cared for you. We are very fortunate to live in a place where such great care is easily accessible. The one area I feel we have not had very much luck is finding an eye doctor who not only understands what is going on with your vision but can articulately explain it to us. So when we heard your eye doc. at Children's was leaving and the earliest they could get us in with anyone knew was NEXT April I knew it was time to make a change. Fortunately I knew who to call and they referred me to a doctors who specialize in kids with vision loss.

Although the appointment was grueling 4 hours (why we were the last patient seen but we got there at 2:45pm I don't know...very frustrating..but typical..)long it was informative.

The new doc. did not have any records of your past eye exams and I gave him very limited information for the purpose of wanting an unbiased opinion. In a weird, twisted way I was comforted that he had the same diagnosis you received in April 2007 after undergoing two eye surgeries. He used terms I had heard before; scarring, macula dragging, Monocular Exotropia, Malignant Myopia......Obviously he knew what he was talking about. He confirmed what we already new about your left eye.....so eloquently articulating that the eye is "trashed..." aka blind. He was very apologetic....I laughed, thanking him for his sincerity but reiterating the fact that we have had a long road and are WAY over the fact that our daughter is legally blind.

Interestingly he found that your glasses prescription for the right eye was WAY off. This did not surprise me in the least. You have about a 4 foot field of vision with your glasses. He said either the last doc was way off in prescribing the strength, or that eye has gotten progressively worse within the past 3 months. While we do know that your vision can deteriorate, based upon the amount of this this doc spent testing your eyes vs. your previous exam, I think it was the former. So he doubled your the strength (from -4.0 to -8.0) and excitedly told us how this will open up a whole new world for you.

I will never forget when I first received glasses when I was in grade school. The world as I knew it did change. I didn't know it was possible to actually see when the teacher was writing on the board, or read street signs while riding in a car (I was finally a contender in the "find this letter on a sign..." car game, alright!).

I hope your world opens up just as mine did. You compensate so well for your vision loss. Most people don't even realize that you cannot see very well. Your hearing is impeccable and the rest of your senses are always on alert. You are so comfortable with the little rectangle rug you spend most of your day on; you know where to look when you hear someone at the door, you know where the dogs are coming from when there is swish of the doggy door, and you instantly smile when you hear a familiar voice....all of this without being able to see.

Most of the time we forget that you cannot see- I think this is our gift to you. While we take the suggestions from your vision therapist, we treat you as if your vision was 20/20.

It is when we are in the outside world, where you are not familiar with your surroundings, that we notice how much your vision limits you. On a recent shopping trip we not only noticed how disconjugate your eyes were but how you did not recognize us when we stood only a few feet away from you.

Although the world may seem like a dark unfamiliar place, you will learn to map it just like you have your rectangular rug. Never forget that you are a light to this world and have taught us all to see in ways we never thought imaginable.

6 comments:

Beautiful letter Jen. Jack's Rx is -11.0 and -9.75 (Yikes!) I guess he is legally blind too, although I've never really spent much time dwelling on that. I realize our situations are very different because Faith is mobile and her vision loss impacts her more. I'm glad you found an ophthalmologist who was thorough and compassionate. I hope the new Rx gives Faith a clearer view of the world.

I'm so glad you checked back in with your Blog followers. I knew what was distracting you from your posts on the trach board, but you were definitely missed!

Glad to see you are back my friend. I was starting to worry that you had actually gotten bitten by a vampire and you had become one of them! I am so glad we didn't lose you to the dark side. :) Good luck with that laundry pile!

Faith, you definitely are a light in my world. You have the most beautiful smile ever!

I stumbled across your blog and find that I feel a kinship with your blogs. Your Faith is beautiful and although, your life is not as you pictured it - you three are doing an amazing job of navigating through the uncharted waters and making the most of it all at the same time. I hope the same can be said of us. Our dreams were changed up when our only child was born with Down Syndrome. Not exactly as we had dreamed...but he's a joy to us and we can't imagine loving anyone more. Have a wonderful, healthy, magical Christmas!! Now that Faith has new prescriptions she will be enjoying it all more than ever!!With lots of good thoughts~ Lauri St.Pierre (Landstuhl, Germany)

What a beautiful letter. I'm also happy to hear you found an eye Dr that took some time to understand and explain things. You both are doing amazing things with Faith. You can feel how very much you love her in every single word you type. In some ways, she has given you a vision, just as you are doing with her.

I'm also glad you finally left Edward:) I hope you have a great weekend.

On February 4th, 2007 our little butterfly Faith Edona came into the world 15 weeks premature. At 25 weeks gestation she weighed 1 pound 6 ounces. This blog chronicles the ups and downs of life with a medically fragile child.